Promoting speech at a very young age

Tommy made my day today after a long day of hard work. My eyes are in tears, just to remember when I heard Tommy saying "thank you" this evening.  Any parent with a kid with a genetic disorder know how it feels. I don't know when I will hear it again, but I know he can do it. 

Tommy's therapies think one of Tommy's greatest skills is communications. We have been working really hard to provide him with every tool that  become him verbal since he was a newborn (and maybe since he was in the womb). 

• We talked to Tommy since he was in the womb. I used to explain to him when he was an unborn baby how it would be to take a bath every morning when I was taking a shower. He enjoyed the first bath. Explain the environment around them help them to anticipate and learn new concepts.
• We taught Tommy to pay attention since he was a newborn. We started with playing music to let him pay attention to sound for long period of time. Classical Music CDs are great to star during sleeping time  (I also put him to listen to classical music in the womb). He has been exposed to many sounds by introducing him to simple instrumental music toys such as: piano, maracas, drum, guitar and any kitchen or house-keeping  utensil that produce a sound. He has a long repertory of music including American Indian music.
•  We also have a lot face to face interactions to promote eye contact since he was a newborn. 
• We started to call him by his name since he was born. He responded to his name since he was about 4 month old.
• We read to Tommy since he was in the womb. I read to him during bath time when he was a newborn to take advantage that he was awaked and very alert. Reading to him is part of our daily routine. Reading increases language comprehension. 
• We promoted gesture since he was a newborn. My husband started to wave "bye-bye" to him when he was a month old. Tommy was about 5 month old when we saw him for the first time waving to daddy. He mastered it when he was about seven month. He currently initiates waving to estrangers on his own at his 18 month, which is an indication that his expressive communication is progressing. 
• Turn taking is other way we have used to encourage speech. A great activity is to play with a ball and a car toy throwing the ball to the baby back and for.  "High 5" and "down low". is other good way for gesture and turn taking. We taught Tommy "high 5" and "down low" when he was 9 month. He currently initiates those gesture own his own, too.
• Label objects and people by pointing. Tommy's pointing skills with index finger started to emerge when he was about 15 month. Before he was using his open-hand as a gesture to point at pictures once an awhile.  
• Speech evaluations to monitor speech and oral motor. The first Tommy's Speech evaluation was at 6 month old. We didn't have concerns, but we wanted to monitor his pre-speech development.  The second evaluation was when Tommy was 8 month old. This evaluation showed he had mild delay in oral motor skills and a mild delay language comprehension and language expression. Because of this evaluation we realized I was focused in teaching him more Spanish than English. We also realized we should improve our playing skills to expose him to new games and toys.  We hired a private Speech therapy for this evaluations. Because of this evaluation I requested Speech therapy through the EIP, but it was denied because his Pragmatics skills were in the 9-12 month level and Gesture skills were emerging at the 9-12 month level when he was 8 month. Pragmatic language is the area of language function that embraces the use of language in social contexts (knowing what to say, how to say it, and when to say it, and how to "be" with other people). Our last evaluation was when Tommy was 13 month because I observed lack of expressive communication, even although he was saying "mama", "dada" and "hi"; He was also signing "more" and all done". But he wasn't combining gesture with pointing! We took him to Sensory Solutions  (We highly recommend their services [excellent therapists, great equipment and affordable price]). The evaluation showed that Tommy's receptive language was in the average range, but his expressive communication was delay. We started private services with Sensory Solutions and we are seeing the results today (We started Speech therapy once a month through the EIP 2 month ago).

Currently, we are teaching Tommy to read by using the first kit of the Love and Learning program. I also know other two programs that have been designed to teach children with Down syndrome to read. Those are:  eRedingpro and See and Learn Language and Reading. According to the article Reading and writing for infants with Down syndrome (0-5 years) by Sue Buckley and Gillian Bird, "Teaching reading to teach talking is probably the single most effective intervention for helping children with Down syndrome to overcome their learning difficulties... Beginning early, by introducing young children to reading from two years of age, will promote the development on both their language and their literacy skills." 

Our next step is to star the Listening Program based on the Tomatis method. "The Listening Program’s psychoacoustically modified music and patent-pending production techniques are designed to stimulate or “exercise” the different functions of the auditory processing system. This enables the brain to better receive, process, store and utilize the valuable information provided through the varied soundscapes in our lives such as music, language and the environment in which we live."

Developing Tommy's communications skills have been one of our priorities because it is what will connect him with the world. I felt that every sacrifice we have done is nothing, comparing with the great feeling of satisfaction I felt today. Hearing "Thank you" from him it was like he was telling me: Mom "thank you" for loving me and accepting me how I am. My boy has a beautiful voice!

Teaching Tommy to read

I have been very proactive since I was prenatally diagnosed of carrying a baby with Down syndrome. While I was pregnant, I was determinate to find anything that would help me to stimulate my son before and after birth. Then, I found Down-Syndrome Online. This a very helpful website to start looking for information of how to teach a child with Down syndrome.  "Down Syndrome Online offers a comprehensive, reliable and up-to-date range of information, resources and services for families, practitioners and researchers caring for, supporting and investigating Down syndrome. Down Syndrome Online is published by Down Syndrome Education International, a leading international charity dedicated to advancing the understanding of effective ways of help the development and education of people with Down syndrome."

Our goal to create a future of opportunities for my son started before I planned. Reading is something you would think to teach to your child when she or he is at school. After talking with other parents with kids with Down syndrome who have taught reading to their kids at early age and reading the book "Early Communications for kids with Down syndrome" and many other articles related to this topic, we are convinced that it is beneficial for our son to read at a very young age.

There is one article a personally recommend to other parents is 'Reading and writing for individuals with Down syndrome - An overview' by Sue Buckley. According to this article, the benefits of teaching reading to teach talking:

• Children with Down syndrome have difficulty in learning their first language from listening 
  
• They find learning visually easier than learning from listening
  
• Printed words seem to be easier for them to remember than spoken words
  
• Print can be used from as early as two years of age to support language learning
  
• Many children with Down syndrome can begin to learn to read from this early age and are able  to remember printed words with ease
  
• All language targets can be taught with the aid of written material, even to children who are not able to remember the words and read independently
  
• Reading activities, at home and in the classroom, teach new vocabulary and grammar.
  
• Reading enables the child with Down syndrome to practise complete sentences - teaching grammar and supporting correct production
  
• Reading can help speech at the level of sounds (phonemes), whole word production and sentence production
  
• Reading to children with Down syndrome and teaching them to read, may be the most effective therapy for developing their speech and language skills from infancy right through school years
  
• Research studies show that reading instruction in school has a significant effect on language and working memory development for children with Down syndrome
  

We started teaching Tommy to read a few weeks ago with The Love and Learning Program. This program was developed by Joe and Susan Kotlinski.

"After our daughter was born with Down syndrome, the doctor told us that we must be realistic and face the fact that our daughter might learn to feed and cloth herself but would not be able to learn higher functioning tasks such as reading. We decided to try to teach her anyway. Because we were not able to find learning materials we felt were suited to her special learning needs, we decided to make our own to help her with language and reading development. We were amazed at what Maria did learn. Encouraged by Maria's preschool teacher we decided to share the technique with other families." 

~ Joe and Susan Kotlinski

The process to teach a child with down syndrome to read is a long term process and it shouldn't take more than 4 minutes a day with the Love and Learning program. We bought the first kit a couple of weeks ago, and Tommy seems to enjoy it. We are combining this program with sight word books and flash cards. 

To get a better guide and support on teaching our child to read, I contacted the Down Syndrome Education International Organization to participate in the study for early readers with Down syndrome. 

Moving Forward

Tommy is motivated to move forward. We never thought that giving him a little break from his therapies would motivate him to be more mobile. His PT was right, he has a mind of his own. He reminds me when I was a child.

Constantly Progressing

We are a young family that is raising a boy with responsibility and a positive attitude, which is not much different from other young American families. The extra chromosome has changed a little bit of the way most people raise their kids. But because of this extra chromosome we are learning many things about early intervention that has empowered our parenting skills.

We want to share all the amazing progress our boy is having, because he is a true example that we all are God’s kids who have been blessed with a set of skills, but sometimes it takes a little bit longer for those skills to develop.

Tommy playing skills are constantly improving. He started to pretend feeding and give me my drink a while ago. We also pretends to talk on the phone. He put his hands on his ear, his phone toy or the actual phone when he talks on the phone to "ita" in Panama. He is also pretending to brush Fred Bird's hair. He is hammering his peg toy and playing the drum. His toy preference is changing because he likes more simple toys. He is stacking blocks. His bigger tower was from 4 empty shoe and toy boxes. He was able to match his puzzle (the sheep figure) three times a few weeks ago. We are now playing with flash cards and he recognizes 42 cards, Yahoo!

Tommy loves rough-housing play. We think he will do extreme sports when he gets older. He enjoys to be up-side-down, to sewing very fast in the swinger, to wrestle with daddy, to bounce on his big ball (the faster the better for him). We have a lot of fun!

Our boy is a singer. He likes to sing in baby language. He sings and does hand play with Twinkle-Twinkle. I love to see him doing the shapes of the diamond when we sing Twinkle-Twinkle. He also enjoys the song: Row, row your boat. We sing “Head, shoulders…”. He knows where his head is, and he is leaning where his nose, mouth and feet are. He likes to sing even opera with Daddy on the car (Those two have fun when they are together).

Our boy is a good imitator, too. He likes to imitate sounds and actions which is very important to learn. He does like the cow, sheep, turkey, horse, dog and car. When it is time for desert and he sees the little bowl, he does "mmmmm". I went to Baby’s R Us the other day and I suddenly heard Tommy doing “mmmmm” and looking at the baby food. He also does the refreshing sound from the old Pepsi commercial.

Tommy has good communication skills. He is becoming verbal. He says a few words, those are: hi, no, yeah, agua (once an while), “tetita or teta” (milk or cup), and "tita or ita" means "abuelita" (granny) in Tommy's baby language. He also says "Hi dada" and "No ma". He said yesterday "Ok" while he was with his Speech Therapist. He already initiates waving and high-5 on his own to interact with others. Tommy does 2 gestures that he converted into sign language. One gesture is that he rub his head with one hand, this means he wants massages on his head. The other one is that he wipes his hands, which means use hand sanitizer. Once, I changed his diaper and I picked him up from the changer and he refused. He did the gesture of wiping his hands and I immediately understood I didn’t use the hand sanitizer. He let me hold him after I used the hand sanitizer. I was extremely happy because his expressive communication is coming along.

Tommy is signing and able to understand English and Spanish (too many communications going on). But we think the sooner the better. He signs all done, more, eat, baby and his version of drink. He learned to sign "baby" by watching the video. I knew because I was singing a fragment of the video song that says "baby, baby, baby signing time" and I saw him very excited signing his version of baby and you can see it in the following video.

Tommy's self-care skills are very good. I think this is because he doesn't have sensory issues. He likes to "bush" his hair and his teeth (Well, his gums because his teeth are taking forever to come out). He also takes his cloth off with a little bit of help and he is trying so hard to put his cloth on. He is actually able to put one leg of his pants on. Impressive! His Occupational therapist says that taking his cloth off is age appropriate, but trying to put his cloth on is for an older kid.

His gross motor skills are slowly progressing, but progressing. His Physical Therapist (PT) thinks Tommy is choosing not to be mobile. Because his decreased muscle tone is mild and his body is strong enough to get around. We got into the conclusion Tommy is being a little bit manipulative because mommy spoils him too much. She also thinks Tommy is tired of all of us pushing him to get mobile. He may probably want to try it on his own because he is very independent. Therefore, she decided to do something unusual, taking him out of the therapy for a little while. We did and we are astonish of the amazing progress he has done since then. He has gone from barely moving to a lot of motion. It sounds ironic, but it is true!

Our PT says that it is the first time she suggested "No therapy" as a therapy without having any medical study supporting the "No therapy". She talked to an experienced PT who said that it is very rare that this happens, but it happened to her twice in her 25 year of experience. Our PT thinks that Tommy has a mind of his own.

His therapists also think he is not walking yet because he seems to be completely focused on his communications, fine motor and playing skills than on his physical skills. The most important for us is that he is constantly progressing.

We feel God chose us for parenting Tommy because he knows our hearts. He knew Tommy would complete our lives with or without the extra chromosome. He knew we would fight for building a future of opportunities for our son.

We don’t know what the future grants for Tommy, but we know he will keep surpassing our expectations.

Moments of my life

This slide show displays some spontaneous moments in my life. If you scroll down, you will see videos of me doing all kid of stuffs -Tommy.

Make a Smilebox slideshow

The True Story Of A Super Baby

My name is Thomas Aidan and I was born on March 16th, 2008. I am 7 month old. I wear some 9 month cloth because I am a big boy. I am a very happy and active baby. I enjoy life as any other baby of my age and I have an extra chromosome, which has made me “a super baby.”

My mommy and my daddy knew that I had an extra chromosome since I was a little tiny curious fetus. My mommy was about 3 1/2 month pregnant when her blood test showed that I may have Trisomy 21. It wasn’t until a month later that my mommy and I had the amniocentesis. I wasn’t scared when the needle got close to me. I could heard my mommy’s thought telling me “move to the other side”. I just did! I didn’t move until the doctor finished. After my mommy got home from the hospital, she rested the whole day and when my daddy got back from work, I kicked as hard as a little wild bull to tell them I was alright. I remember, they were so happy. How many mommies do remember the date of your baby first kick? My mommy does, it was on the evening of October 26th, 2007. It was a happy Friday.

My mommy and my daddy got the results from the FISH test on October 31st, 2007. It was positive, I had an extra chromosome. They cried a lot because they didn’t want anything wrong to happen to me because they already loved me without knowing how I would be. My mommy cried a couples of time, but two weeks later she was smiling and happy again because she always knew that I was alright. We had a special connection that just mommies are able to understand.

My mommy and my daddy never gave up on me. My mommy instead started a battle against Trisomy 21. One day I could feel she was very tired at work and she was thinking of me, she was petting her belly and I wanted to make her feel better and then, I kicked back. Immediately, she thought if she could keep me very active, it would improve any low muscle tone problems that I may have before birth. I was a very active unborn baby, but for my mommy wasn’t enough. She invented a prenatal stimulation program. Sometimes, I heard her making weird noises, shaking me and talking to me. I didn’t understand so much, but to make her happy I played the game. I kicked back in the same place I heard the noise. I used to have long conversations on the phone, while I was in the womb, with my Granny Nella and my Aunt Ibeth from Panama. I didn’t understand a word of what they were saying, but I kicked about three times because I knew they wouldn’t let me sleep if I didn’t kick where the phone was. Maybe my mommy’s crazy prenatal stimulation program helped me to be “a super baby” or maybe not. But what it is true is that I am surpassing all the expectation of having Trisomy 21 since I was in the womb, as my mommy said in her e-mail to announce my birth:

“Most of you know, or maybe not, that Tommy is a baby with Down syndrome. We feel that God has blessed us in all ways with our son because he has united people praying for him; even although they don’t know us. He was considered a very active unborn baby, when babies with Down syndrome are not active; He reached an average size when some babies with Down syndrome are under weight and tinny at birth; all his body structure is normal which means he won’t have most of the sever complications for having Down syndrome; his heart has an excellent heart rate and function, which means he won’t have an open heart surgery as many other newborns with down syndrome. Most babies with Down syndrome have low muscles tone, but Tommy seems to have good muscles tone and excellent reflexes. We couldn’t have a better baby, because he is already perfect surpassing all the expectations of the Down syndrome.”

I continue surpassing the expectations of the Trisomy 21 because I am accomplishing all my milestones at the same pace than typical kids and some of them a little bit earlier. The first time my mommy and my daddy saw me holding my head, I was just about 40 hours of being born. My pediatrician and my therapists agree that I have an excellent head control. I have smiled since I was 5 days old, the average for typical kids is when they are 1 month old. I tried to flip over since I was two weeks old. I finally flipped over for the first time on April 14th, 2008. I flipped over again on April 16th, 2008 (the day I was one month old) and I keep flipping over since then. I started mouth play with toys since I was 3 month old, most typical kids do when they are 5 month old. I have responded to my name since I was 4 month, this is an emerging intellectual skill that babies do between 4 and 7 months. Just say my name and I will look at you!

Now, you know my story of how I became a super baby! My mommy and my daddy have given me the opportunity to experience a full life of love, care, stimulation, toys, clothes, formula, baby food, a lot of diapers, kisses, hugs, and friends. Would you do the same?

Communications skills

We have been monitoring Tommy's speech and language development since he was 6 month old because it is very common that kids with T21 can have problems in this area. We also introduced sing language to him at a very young age because it helps kids to learn more words faster.

Signing has many benefits, such as: increase self-esteem, reduce frustration for parents and babies, enhance language skills, and increase IQ. Tommy is currently signing "all done” and "More". He started to sing weeks before to our trip to Panama and he constantly does it now. He is learning to sign "milk". Maybe he will soon have a whole vocabulary in sing language. I have seen other kids who by age 0f 2 sing 30 or more words. We would like that Tommy could develop sign language as an extracurricular skill. See the video below, Tommy is signing "all done" and his variation of "more" (he claps and holds his hands).


According to the last assessment, Tommy's comprehensive language is in the average range for a kid of his age. Currently, he understands English and Spanish. His expressive communication has a mild delay, it could be because he has mild decrease muscle tone in his mouth and he is learning English and Spanish at the same time. As a bilingual person, I know that learning two languages is not easy, but it is beneficial. It is easier when kids learn a second language when they are little because they pick it up faster and they don't have accent. Be bilingual increases the IQ. It also gives better opportunities in this global world.

We thought it would take longer to hear Tommy's first word beside Ma-ma and Da-da, but he started to say “hi” at the end of his 12-month, but we didn't believe until our ST confirmed it to us. We were so excited because of his first word, and then on May 15, we were watching a Spanish program for kids about the water. The last word in the program was "agua"(water). Tommy just repeated "agua" with a perfect Spanish accent. I immediately told him say "agua" and he repeated. Days later, I took him for a walk and I was showing him the lake and I told him look at the "agua" (water) and Tommy again said "agua". I will try to capture the moments when he is saying hi and "agua". Our boy keeps surpassing our expectations.

Tommy's play time

Playing with toys is the best part of the therapies for us. Tommy spends a lot of time playing with Mommy and Daddy and it could be one of the reasons Tommy is progressing very well. Tommy's hands and body coordination are getting better every week. When we play with Tommy we don't look for perfection because understanding the concept behind the game is the most important. Perfection will come later with practice. Following there are some things Tommy is doing with objects, which are appropriate for his age.
• Throw and pick objects

• Open and close drawers

• Take the stocking rings out of the pole and stocks two rings in the pole, Yahooo!.

• Drop things into containers. The video below shows when Tommy was learning to drop in.

• Empty and fill containers. He needs more practice in filling the containers.

• Activate switches on the three button pop-up toy, activity table, little leaps video game control, and other toys. As an additional activity, he turns the light off his room. He likes to activate the peek-a-boo books with animal and transportation sounds.

• Spin whiles. For example, he began to spin the phone disk toy with his index finger.

• Pouring water in the bathtub, but he needs more practice. We are working on pouring into and out of containers.

• Put objects through openings. He is occasionally dropping the coins in the opening of his piggy bank toy. He likes more to move the coin up and down in the opening. We keep working on this game.

• Take pieces apart. He takes starts apart and pull the cord of his bathtub toy, but he needs more practice to put pieces together.

• Blow bubbles in the water when he drinks from a straw or from an open cup. This is a great emerging skill because it is the beginning to blow with a bubble blower.

• Manipulate simple locking devices. For example, he opens shoeboxes.


• Kick, throw and catch the ball. He perfectly understands the concept. One his therapist was amazed how precise is Tommy by kicking the ball, even although he is not walking yet. He is also trying to catch the ball, but it's too fast for him. Therefore, we use a balloon instead to play catching the ball. He likes to throw he ball to anyone who plays with him.

• Place objects in upright position. Tommy place his bubble maker toy in an upright position when it falls.

• Build a tower of blocks. Tommy is building a tower of two boxes. Tommy likes empty boxes more than his stacking blocks.

We are working on Tommy's playing skills and we would like to hear your advises, ideas, or activities that we can try to stimulate him. Please feel free to leave your comments in this blog or send me an email.